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In searching for inspiration for writing this series on lupus awareness month, I’ve thought back to many of the things that I have experienced, and many of the things I have learned that have helped me cope. I suppose that is really one of the things that I have to be most grateful for, lupus has taught me more in my 36 short years , than some people would ever learn in a lifetime!

Today’s tip has to do with hospital trips. As lupies, we unfortunately have more than our share of doctor and hospital visits. Since I was young I’ve been hospitalized every year , at least once. Most years , many more times. A lot of the time it would be a rush job, and we would leave the house snatching this, socks, toothbrushes, extra underwear, items flying through the air in hopes that they would reach the suitcase as we ran for the van , and out the door. Finally , after lots of visits where we ended up with no pajamas, or shampoo, we decided we’d start packing me a “just-in-case-bag” . You know , (Just in case I have to hurry to the hospital!) . 😀

Now everyone’s just-in-case bag will be different, depending on what YOU need when you go, but here is a typical list of the things I pack:

Things to Pack Just in Case

1. One extra set of clothes for each day you plan to be gone , five is good ( if you’re like me , you DON’T want to live in the heinie -showing hospital gowns)

2. In gallon zip-loc bags ,roll your underclothes and socks for each day( I like fuzzy character socks!)

7. HAIR STUFF– Yes, I said, “stuff”. A hair brush, gel, a comb, bobby pins, an elastic band, hairspray, whatever you need to tame your hair into some semblance of normal and NOT the Creature from the Black Lagoon, trust me, you will be GLAD you did this.

8. Chap-Stick- or Blistex or Carmex or whatever you use to slather on your lips, heed me when I say……..”BRIIIIIIIIIIIIINNNNNNG IIIIIIIT” your lips will be eternally grateful, I promise.

9. Art paper, pencils or a book to read, and yeeeees, I know, people have tablets now (don’t get ahead of me!) for that kind of thing, but there is just something soothing about the feel of REAL paper!

I’m a little confused I guess,
I don’t understand why.
Why you hurt me all the time,
and try to make me cry?
I know that I’m not perfect,
but I never claimed to be.
I only know one way to live,
And that’s just to be me.
I get that we’re polar opposites,
you’re the sun and sandy beach.
I’m winter cold and drifting,
the moon you cannot reach.
I’m sorry I can’t be the person,
that you need me to be,
I don’t know how to change it,
so I’m setting myself free.
I’m one thing and you’re another,
and I ‘m tired of playing games,
I ‘ll always be just who I am,
I’ll always be the same.
It hurts that you don’t want me,
but I have to let it go,
my heart can only take so much,
of this bruising in my soul.
So now you’re free to be the person,
that you want so much to be,
I’m just here in the shadows,
you don’t have to worry about me.
I’m going on with what I have,
and leaving you behind,
I hope you have much happiness,and peace to soothe your mind.
I’ll always have a prayer for you,
I know you’ll have the same,
I ‘ll keep the good times in my heart,
and won’t forget your name.

My life has been a funny thing ,
it started out as just bout me,
I guess I thought that’s the way it should be.
Then something crept in on subtle wings,
on clawed feet ,
into my being.
It had a name ,
We could not speak,
this horrid beast.
And suddenly,
I knew.
My life had not meant to be,
just about me,
the pain so deep,
the tears that steeped.
For all around the world there sleeped,
hundreds, thousands, more.
This monster tore.
Its jagged teeth .
Bodies cleaned,
restless,mean.
My words , you see,
I use to cleave and daily free,
MY thoughts from
lupus’ monstrous’ hands.
“NOT ALONE!!”,said I.
“NOT ALONE!!”.
“FOREVER TOGETHER!!”, said we.

I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?

Well, It is the 11th day of March and my first day to post in 2013! It seems like forever and a day since I’ve posted! This has been a very rough year for me so far. Lupus has been kicking my tuckus. How are you all? Is the new year going to suit you? How in the world have you all been?!? I feel like I have dropped off the face of the earth! It’s good to be back in the blogosphere as they say! I hope you are all doing well, or as well as you can.

My health had been great ! I suppose that must be one of THE most frustrating things about lupus EVER. To be fine, and then BAM! You just wake up and have to start all over again from scratch. I just had a three year remission period , with NO medications needed. It was fab. I was able to really get out of the house , I was even able to go with my kiddos to activities, and lost a ton of weight. Yay, me!

But , starting late summer 2012 , I really started to go downhill again. I had to go back on chemotherapy, and steroids. These were the drugs that sent me into remission before so we had no reason to think that it wouldn’t work this time. Well, surprise. Chemotherapy not only decided to make me seriously sick ( crazy nausea, anyone?) , but it didn’t help the lupus any either. My rheumatologist told me about this fairly new treatment called Benlysta, and thought that I might be a very good candidate for it.

So after much paper work and waiting , I got approved and had my first infusion today. Tomorrow, I’m going to post about the whole process, and how it all went, but for today, I’m just checking in with you all, and saying hello , my old friends, glad to be back “home”. Much love, and as always, ((HUGS)) Ruby

There are only two ways to live your life. One is , as if nothing were a miracle. The other, as if everything were a miracle. ~ Albert Einstein

Which would you choose? Will you choose a life of wonder, and amazement that we live in such a beautiful place? Or will you choose negativity and despair that all magic is gone from this world? It is very easy to slip into that kind of thinking. We see SO many terrible things these days. Wars, rumors of wars. Killings, drugs, chronic illness. We see the environmental woes of the day, and the poverty of places we can’t reach. Maybe personally you have a lot to deal with. Maybe you’ve lost a loved one, or your body is giving out on you way too soon. I personally have a whole laundry list of things that I have to cope with on a daily basis. But every day I WANT to choose to see the miracle. The green of the grass, or the butterfly on the wing. My children grown an inch taller. A newborn puppy. Even if you don’t believe in God, there are SO many wonderful things to be happy about. No matter the situation, there is a crack of sunshine somewhere. Maybe we have to look a little harder to find it somedays, but it IS worth it! I’m keeping my eyes open for the miracle of the day, I hope this inspires you to do the same! 🙂